To listen to Hindy on the Radio Show “Something To Talk About With Randi Wartelsky” go to their archives: http://www.nachumsegal.com/jm-in-the-am/something-to-talk-about-with-randi-wartelsky/
Listen in: Hindy will be on the radio today, 3pm, talking about our Ayelet Z”L, along with Jay Feinberg from the Gift of Life Foundation
Tune in today at 3 PM on the stream at Www.nachumsegal.com
Good afternoon everyone, we’re so honored to be with you today. And thank you to the leadership of JFNA for giving us the opportunity share our story with you about our daughter Ayelet, featured here in a Dallas style cowboy hat.
So, let me tell you a little bit about who we are.
My name is Hindy Poupko and this is my husband, Seth Galena. We met, like all good Jewish couples, on the upper west side, and still live there today.
We’ve each spoke about our story in public before, but never actually together and I think you’ll see how different we each are but that is was precisely those differences that allowed us to be there for each other these past few years.
So who is Ayelet?
A few years ago I became pregnant with my first child. Everything about the pregnancy was normal until I didn’t feel her kicking one day at the beginning of my eighth month. We rushed to the hospital and Ayelet was delivered a few hours later at the shockingly low birth rate of 2lbs.
We named her Ayelet after Seth’s father whose name was Hershel, which like Ayelet means “Deer.” She spent 6 weeks in the NICU growing and getting stronger and we were overjoyed to bring her home when she reached 4lbs.
For the first year of her life she was like every other UWS kid and we did everything right, the designer stroller, designer clothing, and she even made it to the Hamptons.
While I was dressing Ayelet like an American Girl doll, Seth was dressing her up in his own unusual way…and we started posting insane pictures of her on Facebook which highlighted her incredibly small size. This was Ayelet’ first debut into the social media space.
But sadly at about a year old, all sorts of symptoms started arising, she stopped growing, not really eating, and we began our search for answers - going to every hospital in New York City - it became a full time quest, from specialist to specialist experts analyzing Ayelet – trying to pronounce her name, the trick I use, I Don’t Say it, I YELL IT - first it was an allergy, then it was a stomach thing, its an immune thing.
And sadly our worst fears were realized when a doctor at CHOP in Philadelphia tested her for a genetic disease so rare that she had a 1 in 4 million chance of having it. And they called us saying - she tested positive.
Things within an instant, within the blink of an eye, got very serious.
We became Ayelets, deers, caught in headlights listening to the doctors heavy words.
And what we learned was Ayelet was diagnosed with a disease called Dykaratosis Congenita that would require among other things, bone marrow transplant for survival. Her immune system would fail without a bone marrow transplant. And worse, when we checked the registry, there was no perfect matches in the system.
So herein lies the challenge: We as first time parents hearing this heartbreaking news, had a choice, we could sit hopeless and in sadness or we could do everything in our power to fight for Ayelet. To find a match, to give her a chance at this life. But to put ourselves out there fully, about a serious topic we ourselves barely understood, and now needed the help, the goodwill, of others.
What would you do?
And so right then and there we decided we’d do everything we could - I got online publicizing that night, we need to find a bone marrow match, and I had a Jewish humor website called bangitout.com and I used that to get the the word out, and we setup a facebook page, a gift of life page, - and we walked that weekend from Synagogue to Synagogue on the Upper West Side telling them the urgency of our situation, and beyond and to institutions, YU, AMIT, Hadassah the Federation. We used all the resources we could think of to find Ayelet a donor, someone who could help her, help us. Our friends even setup a swabbing booth at their wedding. We would set the tone, we would put ourselves out there and hope, pray that miraculously others would follow.
I will never forget walking into the Yeshiva University book sale and seeing Ayelet’s picture on a stranger’s phone. He was showing it to his daughter and explaining why he was going to the Gift of Life Table.
On the one hand, it was devastating because it made it all so real, but on the other hand, it was incredibly powerful and uplifting to see someone care about our daughter in that way. This was our first taste of what our community was truly capable of and how they would continue to partner with us to change the narrative.
What happened over the course of next few months, since we alerted the community to Ayelet’s story, was truly awe inspiring. That first facebook post about the local Gift of Life Drive in New York spurred our community into action. Hundreds of drives were held in communities across the country in search of a match for a little girl they never met.
Thanks to those drives, we’ve raise over $300,000 for Gift of Life and found over 60 matches for people in need of a transplant.
Word spread so fast we got the media and celebrities, Rihanna, 50Cent Leighton Meester tweeting for a match for Ayelet.
In addition to the celebrity attention, the traditional media got involved as well and we did countless interviews on local and national TV stations.
Till these days were not quite sure why so many people were fascinated with Ayelet’s story. There are sadly many sick children out there. I think that certainly part of it was her dashing good looks, her smile, her innocence, that lit a spark that we did not know existed in our friends our community and beyond.
I think people were also drawn to the story because they sensed that there was a role for them to play- a way for them to change the outcome.
Even though everyone did the right thing, we never did find a perfect match for Ayelet so we moved our lives to Cincinnati Children’s hospital and moved forward with an imperfect match b/c we simply ran out of options…
And when we got to Cincinnati our worlds became the transplant, the process, we’d have to learn how to live in a hospital 24 hours a day, and divide the responsibilities because there were so many components to her disease. And Hindy would take control, become a master practitioner with doctors, the rounds, the medicines, managing Ayelet care for the possible 6 months living in a hospital - and I somehow would fill in the downtime, managing Ayelet’s entertainment, in isolation. Where she could have no friends, or many visitors.
But what we forgot was through all this, Ayelet was actually growing up, becoming a real personality before our eyes - one that I can only describe as a perfect combination of her mom’s determination and her dad’s wacky creativity.
She was so small, but mesmerizing to every doctor or nurse who came in contact with her, her smile, her personality, her creativity.
I’ll give you an example, Ayelet was not able to talk or walk but her personality shown through. So tough like her mom, so determined to do what she wanted, and so clear without words. Eh, pass me this, Eh, get me that. Her Poupko personality came through, with each grunt you knew what she wanted or not wanted. Hindy and I still communicate in that non-verbal Ayelet way.
And Hindy would dress her to the tee, making her literally the little Diva of the hospital. Headbands and couture clothing – Hindy was determined she’d be the best dressed girl in the transplant floor. Ah, the Jewish mother.
And she was so creative – she would find ways to amuse herself, with unusual things in her hospital hell. The medical bottles, and sadly she had so many medicines, and their sticker labels - Peeling them off for hours.
And the straws that came with our dinners she so would love to unwrap. Her imagination, her sense of creativity was so clear over the course of those months in isolation. She created a world with nothing - so so many straws hours of fun where there was none. Even today I still steal straws from 7/11 for her - to remind me of what real creativity is.
And we started a blog that originally was just about what is going on medically, plans on how the transplant would work. Important information to rebuild her immune system.
Heavy stuff, but as we included updates about the real situation of living in a hospital as observant Jews, the humor of it all, and the pain and hardships, the way Ayelet was growing up and the way were surviving with the other parents in this very dark place, the boston accent family, the Chassidic family, the mormon family all sharing one family room, one fridgerator - and people became tuning in - like we could have never imagined. It became thrilling, with every post tons of comments and hopes of a positive outcome. And every comment of support helped, and showed us again, like during the drives, that we were not alone.
And so the blog became half medical and then half humorous. What Ayelet was up to. What we were up to. serious and the not so serious Our down time, our hopes and our menus for Friday night Shabbat meals in the hospital. And the blog leadership began to grow, over 60,000 unique visitors who kept coming back- Seth started to refer to them as “Ayelet Nation.”
We also started to notice a strange trend. Every time we would write about one of Ayelet’s latest obsessions, be it stickers or straws, we would receive packages in the mail
from people we never heard of, sending us these items.
Be it stickers…
We got some crazy things in the mail but the nicest ones were from other people’s kids. One family that we didn’t know, had their kid make Ayelet an honorary member of their Brownie Troop.
We loved this stuff. It made us feel like we weren’t alone even though we spend roughly 7 months in a hospital with Ayelet confined to her room to avoid germs.
Even though she stayed in the same room for months on end, as Seth said, she had an incredible ability to turn it into the most interesting play room in the world- where syringes became the most coveted of prizes.
People wanted to be involved in her story and not just in a passive way. Some people have incorrectly called the readership of Aylet’s blog voyeuristic but it was anything but. These were real people doing real thing. Trying to change the story. They didnt give up when we didnt find a perfect match, they stayed with us and found ways to be active players in the story.
When things got serious, they prayed, they did extra things in the merit of Ayelet like baking challah or giving charity.
The crazy thing is, the transplant worked. We even had a parade leaving the hospital after six months of isolation, hundreds of blog posts later, hoping to never return.
And there were a few fevers and a few returns but we thought we were home free.
But sadly – in the hardest and darkest times of our lives, a few weeks later later there was a glitch in the treatment, and with Ayelet’s weak immune system not fully functioning yet, she contracted a small lung infection, and she was so fragile her body she tried so so hard. And sadly after days of critical care in the ICU, after trying everything we could do, the doctors could do, - with thousands of Ayelet Nation facebook and bloggers following and by our side, setting up prayer groups and baking challahs and saying tehillim, Ayelet could not fight anymore and our world came shockingly crashing down, she passed away, January 31st 2012. Just over a year ago.
Very Dark. Very Hard.
We did everything we could, trying so hard, and there are no answers.
But there is another side to this, because the communities we created from the drives to the blog, our Ayelet Nation as we called them, they had answers.
And the thousands literally that attended her funeral and poured on to 86th St. and streamed through our shiva house knew exactly what to do. So many people would come through the shiva and start like so many of the blog comments started - “you dont know me but”…. “I never met you but” … your daughter has changed my life/inspired me to be better”.
They would follow our brave 2-year-old Ayelet’s lead, who took her two years on this earth and changed our universe forever.
Every blog post was a testament to the larger than life soul Ayelet was. And she inspired so many of our friends to be better, and even crazier - so many strangers.
Ask yourself, as I do, do you know anyone who in their lifetime has saved 60 lives?
And the truth to this is - Life, Ayelet was only about life.
So alive and knew nothing of death or her transplant or her disease, which were all incidental to her real story, she only knew what was worth living for, fighting for, smiling for - she inspired us to be better parents, better friends and a better community. Ayelet’s ability of finding fun reminds us that real life is a gift, a gift, with ups and downs and tears and laughs and complexities. But it’s our job to live it. And we need to focus on what matters most, to remember to be present, to be in it. To pivot to what is important. To Live.
To unpeel the wrappers like Ayelet did of our lives, and uncover what we are really made of. Who we really are. This was her gift to us to carry and hold on to. To find the real us and live up to our potential. Each and everyone of us, to find our Ayelet, the little spark in all of us, the little neshama, and fight for it.
One of the hardest things about losing a child is the feeling that the world will never know them. We know that the world knew Ayelet and thanks to Ayelet nation, they continue to remember her.
There have been countless projects in her memory, all initiated by members of Ayelet Nation- people trying, even in the aftermath of unthinkable tragedy- to change the story- so Ayelet would always be more than a child who succombed to a terrible illness. There was a playground in Israel, a playroom in the Ronald McDonald house, a Torah dedication, and an art exhibit in the Cincinnati Children’s Hospital has been created in her honor.
We had a Gala that raised over a quarter million dollars for the Gift of Life where we awarded the “Ayelet Galena Courage Award” to kids fighting terrible illnesses. Ayelet Nation continues to step up and show us Ayelet lives on. Till this day we continue to receive notices about matches that have been made from drives run in search of Ayelet’s match. She lives on.
In addition to the thousands of strangers who came to the funeral and visited us during shiva, we received thousands and thousands of condolence cards, including cards from kids. .
One of the nicest condolence cards we got was from our very own president Obama. Seth and I were invited to a reception for the NY Giants and as he was walking by I stuck my hand out and said, President Obama, thank you so much for the condolence letter you wrote us when we lost our daughter. He stopped in his tracks, gave me a huge bear hug that lifted me off the ground and then looked us in the eye and said, be strong and keep carrying on. The only problem was Seth forget to take off his red ray bans for the photo….
Some of you might be thinking, how is this a good story? In some ways, it can be viewed as a story of failure. We tried to find her a match and failed and we tried to keep her alive and despite the stickers and the prayers, we couldnt do that either.
But to think about the story that way is to really miss the point. Despite being beaten down time and again, our community stood with us. At every juncture they found a way to effect change. Be it by saving countless lives through drives run for Ayelet. by ensuring that we never felt alone in hospital, and by continuing to keep her memory alive. This is what change and leadership is really about. Its not waiting for the perfect ending to a story but realizing that while there are some thing that will always be out of control, we need to take control of what we can and try to effect change wherever we can.
The change happened with each Facebook book post and each delivery of stickers in the mail. Regular people who decided that they were going to do something to change this story. And they did. What could have just been a tragic story about a two year old dying from a terrible illness is now also a story about the power of community. The people around us chose to change the narrative.
Its also a story about what it means to be part of a Jewish community. There were many Jews who I would never think to hang out with who showed up for us and stepped up to the plate.
There was the chasidish woman in Brooklyn who brought us homemade challah and cakes every Friday for the first few months after shiva, the dance teacher who made tank tops with Ayelet’s name on it, the Israeli stranger who named her child after Ayelet and the chabad rabbis on the upper west side who gave us a free townhouse to live in for a few months while we renovated our apartment after the fire. It made me wonder if I would do the same for them. ..
And so fast forward a few months later - where are we now?
I think one other thing we learned from Ayelet Nation is how to act in times of tragedy. How to respond when things get hard. Dark. Tough.
Last December, when reading about horrifying Sandy Hook tragedy, I came across the eulogy of little Noah Pozner the youngest victim of Sandy Hook and his mother’s description of his love of tacos - which bittersweetly reminded me of another little kids love, - Ayelet’s unusual love of stickers and straws. They just sounded similar. Two Jewish American kids, so innocent, taken too soon.
It was each of their essences, their passions, their way of showing us that life is the most precious, the most rewarding, if you follow those things you love. Whether it’s Tacos, or Straws, or Stickers.
To savor it, to taste it, like the Taco’s Noah Pozner loved so dearly.
And I asked myself, now on the flip side, what I could do to help just a little bit? Anything, do something.
When it comes to tragedy the only thing that matters is how we respond.
Like so many did for for our daughter, Ayelet. Some how I found myself staring at Noah’s picture and rereading his story. Like my own. It was time to act.
And so for Sandyhook, for the Pozners, for Ayelet and for myself, I stayed late one day at work, a digital advertising agency VML, and I setup a simple website. a virtual taco factory for those touched by the tragedy to make a taco, something Noah would have liked, and all you’d have to do is add your special ingredient to it and hit tweet. Cheese, Corn or even World Peace.
As of last week this little project called “Tacos For Noah” had over 8000 taco tributes made for this little 6 year old who wanted to be a taco factory worker so there would always be tacos for the world for others. Instant “comfort food for those who lost and for those who want to share, to remember the life in a positive way.
And honestly the only advice we can give is new experiences will come up, some you choose some you dont, some are yours and some are those of strangers. And it’s easy to just shrug it off, to be apathetic….but in those moments, I ask to remember our story. Remember Ayelet.
The only thing Ayelet & Noah would say to do, is when there is a moment of inspiration or idea remember this, like Ayelet and Noah, like I do: “you don’t know how much you can accomplish, you dont know how many people you can really inspire – you don’t know how truly special you are. Until you try.
So for Ayelet, For Noah, let’s give it a try.
Aish.com interviews Hindy about Ayelet, her impact, and our ongoing fight to find a systematic way of getting every Jew in the Bone Marrow Donor database. We’ve got to find a way.
Her little spark of light, our little Aish, is still shining bright
Thanks to your efforts, we’ve found and hit 60 life saving matches for others through the Gift of Life Keep spreading the swabbing message to get as many people as we can in the registry as there are others, and will sadly be others, that still need to find a perfect bone marrow Match.
To get in the Purim mood here is the connection between Ayelet & Purim from our shloshim last year.
There are too many connections to the stories to ignore. One simple one: Queen Esther is referred to as Ayelet Hashachar. Two Jewish female superstars who saved and inspired many lives.
Picture from last night’s YAD ELIEZER FOR BABIES 6TH ANNUAL TEA in Teaneck, NJ In Memory of Ayelet. We were given a beautiful artwork plaque that has a quote from the Jerusalem Talmud about Ayelet Hashachar, the morning star and the redemption:
"Rabbi Hiyya the Great and Rabbi Shimon ben Halafta were walking in the valley of Arbel at sunrise and they saw the dawn (AYELET HASHACHAR) beginning to break. Rabbi Hiyya remarked: so is the redemption of Israel – at first bit by bit, as it proceeds, it gets faster and bigger".
Hindy spoke movingly about the story of Ayelet.
About the Charity Yad Eliezer
Today, Yad Eliezer’s Feed-a-Baby Program cares specifically for those infants whose mothers are unable to nurse and cannot afford to purchase formula. We provide over 2,000 hungry babies with the proper nourishment to develop into healthy children.
To make a donation:http://www.yadeliezer.org/program_info.php?program_id=39#donate_options
Thank you so much Rabbi Strulowitz and everyone here at the West Side Institutional for this opportunity and for everything that you have done for our family, my mom, my sister and hindy and I.
It’s funny every so often I’ll run into someone who said they met my mom at WSIS, and they have a smirk about their discussion like she is pretty cool, and my brother in law Benj Joffe & sister Sarah had their ufruf here and heck Isaac and I had our first standup comedy show in this very building.
It was about 6 years ago when the shul was just taking off and Rabbi Einhorn had a ‘comedy shabbaton’ and wanted to get others involved, so the bangitout twins would be the Friday night act.
Obviously he was desperate.
Now we had never done anything like this, but we showed up, and I remember the skit, with internet dating just taking off, about a very frum girl and a very non frum guy meeting online and the whole joke was she kept saying how as a frum woman “she doesn’t wear pants”. And he as a frat guy, kept saying to his friends – you’re not gonna believe this “she doesn’t wear pants!” So anyways we bombed, but the shul has come a long way since those days… although obviously not that far since I am back speaking.
Before I do speak about Ayelet I figure I should talk about the parsha, Parshas Yisro the story of the 10 Commandments. And you might get distracted by why is it’s called Yisro, the mere supporting actor, the father in law, when the parsha should be called, as Hollywood called it…the Ten Commandments? Or at least Moses? Prince of Egypt?
And if you read more about Yisro, he seems even worse, like a fare whether fan at best, saying he only joined the bandwagon of the Jews once he heard the awesome news of the Jews winning the Amalek war, and splitting the sea. What kinda mentor is that that he deserves a parsha with the 10 commandments? Seems really odd.
So there are a ton of reasons given, but I thought I’d share a few that I thought were pretty relevant to my own story, the story of Ayelet. My little pint sized 14lb 2 year old daughter whose name no one could pronounce and like yisro had more than 7 nicknames.
For those who don’t know Ayelet, our first born daughter, she was born 2 months prematurely but she found her way and was like most babies on the west side she had cute outfits, the designer stroller, a nanny, tons of facebook pictures, she even made it down to visit WSIS a few times.
But after having some more serious symptoms, and countless doctors visits in every hospital in this city, we learned she had a rare genetic disease called dyskaratosis congenita that required a bone marrow transplant for survival. And worse there were no perfect donor matches in the system.
And I remember we found out on Thursday and that shabbos Hindy sending me to go shul to shul that first shabbos telling each rabbi to make an announcement that we need to find a bone marrow donor – there was a drive at the YU seforim sale, almost this exact time 2 years ago. And I actually wasn’t sure how the community would respond to this serious topic. I barely understood and comprehended the news myself and I dreaded making it public.
And this is precisely what was the first amazement of my daughter’s tragic story, like Yisro, as soon as you heard the news, you, the upper west side somehow responded with an unexpected and overwhelming amount of immediate action of love. You heard the news, Like Yisro, and somehow were driven to get on board. To join our fight.
And when Yisro saw Moshe in pain trying to do it all himself, he realized this wont work.
And you saw us trying to find a match and take care of Ayelet and being in hospitals all alone – the upper west side community, who people trash as transient or cold realized we couldn’t do it alone either, this wont work – and the meals and support poured in.
The only way we would be able to get to the transplant, the only way for the Jews to get Sinai is if other people got on board and helped. Yisro realized this, and so did our community and both devised a system to get others involved.
One of the biggest drives was on Purim at this shul, funded by this shul’s amazing members alone. And through this you gave us hope. A unity, like at Mount Sinai, swept over our community like never before.
Your holy rabbi even setup a drive in far off San Francisco transforming his Shul’s Purim Seudah into a drive, and for that I am forever grateful.
And through these drives and donations and celebrity tweets from 50Cent and Rihanna we were able to find a match for Ayelet to do the transplant. It wasn’t perfect but Cincinnati Children’s hospital, the place we dedicated to do the transplant was willing to do it. And at that point we started a blog to keep our friends and family updated on Ayelet’s progress from the mountain, eh flatlands, of Ohio.
And like the Jews, we would have to prepare for a revelation of our own. Because transplants require serious preparation. They needed to wipe out Ayelet’s current broken immune system and replace it with the seeds of the donors and hoped they’d grow. But to do that there would be a period of isolation because for a few months she would not have any working immune system. Serious risk and serious preparation. Like the Jews at Sinai we were afraid, had no idea what to expect but knew it would be intense.
And Ayelet our little girl, would not be able to be in contact with anyone. Like the Mount Sinai, she could not be touched, she’d have to go it alone. Even our clothing like the Jews of Sinai would have to be sterilized daily.
And oddly the more Ayelet was isolated, we were isolated, going up the mountain alone, the more and more of thousands of people online and beyond wanted to be close to her.
You came to the foot of the mountain.
With every post of her picture on the blog of her progress, dozens of strangers began following her ups and downs. Thousands of emails and prayers and toys and clothing were showing up in our hospital room. We felt as if you were in the room with us. Because you were.
Rabbi Einhorn would email me every so often during the transplant - and when Ayelet got worse, he sent a note asking me if he could fly to Cincinnati to see and visit us. And I thought he was joking and I responded by reminding him you know Ayelet is in isolation, so there is no point. It’s not worth it. And he responded like Yisro, like the Jews at Sinai so perfectly ….“So I’ll sit in the waiting room.” What nation is like this? To be a holy nation we need to show up as much as we can, for those who can’t go it alone. Like Yisro, the Jewish community showing up, is how we were able to make it as far as we did.
And the Thunder and Lightening of the transplant happened and somehow initially Ayelet’s transplant worked and we received the amazing news and were able to leave the hospital! A miracle, a revelation, leaving the most amazing experience, the high of everyone behind us, supporting us.
But sadly upon returning from the high, a few weeks later Ayelet contracted a lung infection she could not fight without a full immune system and sadly after fighting and praying, she did not make it back down the mountain fully.
And we were left coming down alone, broken. Like the Luchos, Moshe comes down from the mountain to find the pain the reality of life, a disaster, and things for all of us came smashing down, this time 1 year ago.
It’s sad, but there is another side to this.
Because throughout the Thunder and the lightening Ayelet the 2 yr old girl in the eye of the storm, somehow was not afraid.
She would find fun in her hospital hell. She could not talk or walk but she somehow was so clear on what she wanted, her Poupko personality, and paid not a single moment to the pain, the pressure, the painful medicines and just enjoyed unraveling straws and medicine bottle stickers. You could spend a day talking and retalking with doctors, but as soon as you would see Ayelet happily playing and being in the moment you too would lose your fear, your neurosis, and would focus on what matters most. Life.
Ayelet did not know anything about death, she only knew life, and through the pain, to be in it, to be in the moment.
To unravel straws and peel stickers, to snuggle with her blankie, to be a kid – We understood and she gave us reason to fight for life, to have no fear. So broken so small, but was somehow able to give us everything. One look at her and you knew everything.
And I think about the Ten Commandments about the last commandment, Don’t Covet, and honestly I, not for a second would trade the time I had in the hospital for anything in this world. Because Ayelet for those months gave me purpose, she gave me a role, she gave all of us a reason to fight – but most importantly for the first time in my life, I wasn’t sitting on the sideline observing, writing a top tens or skits in my head about something, I was in it, I realized I was not just showing up but I was Showing Up, she made me full, she made me present. Because Ayelet was all about life, and when you looked at her, you understood the importance of it.
Yisro and Ayelet both showed us to focus on what matters most.
To show up, to be present through wars, and miracles, through whatever life gives us. Because it’s not all highs, but to remember the inspiration the revelation the North Star, this life affirmation she & the torah gave us all.
And this is the most amazing thing about Judaism – because we are all here living off the inspiration of one moment 5000 years ago that ended literally in a mess. After the high of the revelation, the Jews sinned and Moses smashes the luchos. Disaster.
But the torah is not in heaven, it’s not all a high, there are broken pieces that we need to somehow try and make whole. One moment of inspiration, can change lives for generations to come.
And the amazing thing is, the Jews in the dessert don’t carry the perfect luchos, - The Ark of the covenant, carries what? The broken pieces, it is what helped guide them in the dessert, into life. Because Judaism knows in order to live a real life you need to carry with you the broken pieces, the real pieces, to remember that real life, real Judaism doesn’t end when it breaks, it begins.
And we need to carry Ayelet, our little broken girl with us and her gift. To be in life, be present and choose it, fight for it.
And actually believe, like I do, that we too experienced a modern revelation. Ayelet’s story. Momentum of a community, a miracle and sadly a calamity, a high and a low - but united throughout. The thousands of swabs and the thousands of tears all for one girl who was not willing to back down.
I would even argue there were more than 600,000 people through facebook and social media that were affected by Ayelet’s story. Almost 60 lives saved.
So the Yisros, the people who held us up, who got others involved, deserve the credit for this revelation.
Ayelet who would love to say how big is Ayelet, and she would hold up her hands “so big”, like she was holding up the torah, lifting us up, and show us, like moshe, like rocky, like we won the SuperBowl, to have no fear.
Mi C’amcha Yisroel? Who is like The Nation of Ayelet? It’s this naase vnishma, the doing and continuing to do, to hold up our kids, our Ayelets – and realize we’ve got more work to do.
And so, for Ayelet, let’s get busy living.
Thank you so much Rabbi Schwartz, Rabbi Willig and OZ for having me and for all you have done.
This is dedicated to “Ayelet Yakira Bas Shais Luria” - Today marks one year, her 1st yahrzeit.
Before I talk a a bit about my daughter Ayelet, I figure I should give you a bit about myself – a fellow upper west sider forever, a bangitout.com founder, a twin - so if I may look familiar, it probably is my brother.
About the name bangitout – so when I got my first job in advertising my boss would speak in clichés and would say things like “whats on my plate”, “lets get your ducks in a row” and “up to speed” – “Seth, big project coming, can you bangitout over the weekend? Sure, I can Bangitout? What?” - So I started using these workspeak terms like bangitout, and I randomly bought the URL bangitout.com, because it just stuck with me. And I began posting Jewish forwards, jokes, top tens and then kosher apartments and events.
It’s amazing how one word, one moment, of inspiration can create a world – and we even started publishing something called a seder sidekick, something to add some humor to your seder.
So since Ayelet’s yahrzeit does fall on the parsha of the seder, Parshas Bo, about the story of the Jews leaving Egypt, figure I’d talk about everyone’s love/hate item: matzah.
There is a famous halachic debate on how to fulfill the mitzvah of eating matzah, which stems from why we eat matzah – some say it’s to remind us of the bitterness of slavery, poor man’s bread, (so it can only be flour and water) a slave food, to remind us of the pain in life. And others say it’s for the idea that we rushed out to be free, to be kings like we are at the seder, to know there is a better life, a life we can choose. So which is it?
Is Matzah symbolic of the pain of slavery or for the prospect of the future of the Exodus?
And when I think about it, my daughter Ayelet’s story sorta also has a dual nature
Ayelet, for those who don’t know was born with a rare genetic disease, we actually had the Kiddush/simchat bat here in this very shul for her naming.
It took us a year of trying to diagnose her, and sadly we learned she had a rare, 1 in 4 million chance disease, that would require a bone marrow transplant. Even worse we had no perfect donor matches.
But somehow friends and family reached out doing drives in almost every synagogue on the West Side and beyond, including this one, to find the perfect match that would save her life. And we used bangitout.com to publicize the search.
I always said that if the whole purpose of bangitout was so that we could find a match for Ayelet then dayenu.
And while we didn’t find a perfect match we found one good enough to do the transplant and so we moved to the Cincinnati Children’s Hospital to do the transplant, and like the Jews in Eygptian slavery, Ayelet would have to stand the trials the pain the hardships of a transplant, she would have her own servitude, a transplant would require having to be isolated and locked in a room for months to rebuild her immune system. But we did not give up hope.
And we started the blog to tell this story of these months in one room to help save her, hoping she would get out soon.
But like all bad diseases, treatment requires breaking the patient, like the matzah, with chemo wiping Ayelet’s immune system and tons of meds daily… Ayelet would have her own plagues, trials, more than ten.
Like the plagues, Ayelet had Dam, blood, so many blood draws, needles, transfusions.. And she would sometimes wake up green, and she’d sleep with us and her meds were all over the sheets stained green – and we would literally wake up to see a frog in our bed. And the itchiness of her hair falling out like lice, the sickness, the burning of boils skin reactions, and the harder drugs she became literally a wild animal not herself, not able to sleep.
But we along with the Ayelet Nation of followers, were determined to do everything we could to get her through the pain – these trials, to be free from her isolation room.
And miraculously Ayelet was able to fight, to do it, the transplant worked, and for those who remember we had a parade, an exodus of our own, where we literally rushed out of the hospital, like the Jews out of Egypt, hoping to never see it again.
But like the matzah representing the pain, a few weeks later Ayelet got an infection that she could not fight without a full immune system, and there was serious darkness. And then the hardest plague, a year ago today – the death of our own first born. So hard and heavy and dark, and like the seder we’ve have so many questions, but there are very few answers.
Very sad…so there is one side of the matzah, the broken piece, the lechem oni, the pain, the hardship the struggle – this is part of Ayelet’s story, but you must remember this is not the full story.
Because through this journey, when things were falling apart, when we felt broken and hopeless, we awoken a richness. First a richness of the response of the Jewish community of the west side of courage and fortitude that I did not know existed in this wacky west side community that so many discarded as cold, anonymous – shuls did drives, and fundraisers and meals came unsolicited to our door for months and challahs were baked, and tehillim were said in this very OZ room the night of her transplant - they showed us that there is the possibility of a future, there is hope. A richness of a community both here and beyond.
But mainly it was little Ayelet who showed us this, the richness, the majesty of being alive, being free, being happy. You’d think through the story I just told she would be sad all the time through what I described - but she was nothing like that. Exactly the opposite. She was the friendliest friend. She was a real fighter, a brut, a Rocky Balboa for what she wanted.
There is an interesting medrash that states that the reason the Jews were able to last in Egypt is because the Jewish women would beautify themselves, with mirrors, and show their husbands not to despair. They thought, we need to keep creating, keep continuity, going on living and not dying, there is a future, there still is potential.
The reflection of these mirrors showed them what mattered, what was important.
The mirrors showed a completely different picture than the current reality.
And Ayelet our daughter, I would submit is this mirror. In looking at her face somehow on the blog, through facebook, her pictures, her smile and somehow see how a 2-year old 14lb girl unable to talk could be so “in the moment” and find fun in a hospital hell.
You see instead of seeing darkness in a isolated room, she saw life – she kept on playing when there were no toys, with medicine bottle caps and peeled the medicince labels like stickers – and somehow this hardened little girl was able to show us the majesty of life and how precious it is, and how much we need to be in it, be present and enjoy every moment of it.
Looking at her you saw that potential, that reason to fight for life.
A child is a reflection of yourself but not because you see the current you, but because you can see your potential self. Someone not jaded, happy and present. In it. Alive.
We need to remember this little mirror, little Ayelet, when we feel down or broken or lowly, just like the matzah.
In each of us we have a reflection, a better us, that is locked inside that we sometimes don’t see. This is the gift Ayelet gave us, in haste like the Jews rushing out of Egypt, for only a short 2 years, but those are the moments, like a flash in the mirror that can change our perspective, our destiny, our outlook. Like the word bangitout, one word, one creative moment creates a world.
So Matzah too has both these components, the pain and the potential. It’s got both which is what makes it real. Having both sides is what real life is.
And the crazy thing about matzah is, we only eat it once it is broken – and so many of us on the upper west side and beyond may at times feel broken, like something is missing.
But you have another side. You are suppose to have both parts, it’s what makes us who we are, makes us special, and we need to remember Ayelet, our mirror, to reflect on who we can be. We don’t know what we can accomplish when we see our full selves. Remind yourself of this lesson every day, because this is what Ayelet taught me: You don’t know how truly special you really are.
I hope Ayelet can be this sidekick that we take with us and put in the afikomen bag in our minds, and remind us that while we may sometimes feel alone or broken there is another side of us that is full of life, of a potential of the future. And like matzah, the bigger and better half we have yet to unlock.
If you are on the upper west side we cordially invite you to:
Lchaim to life, to Ayelet
After reading the eulogies of the youngest SandyHook victim Noah Pozner’s mother and uncle, it was clear that the food he loved most was tacos.As his mother Veronique Pozner so movingly stated:
Most of all, I will miss your visions of your future. You wanted to be a doctor, a soldier, a taco factory manager. It was your favorite food, and no doubt you wanted to ensure that the world kept producing tacos.
Noah’s Uncle, Alexis Haller echoed the same sentiment:
Noah was a wonderful son and a loving brother. He was kind, caring, smart, funny, and sometimes even a little mischievous. He liked to tell his sisters that he worked in a taco factory; when they asked him how he got to work, he would give them a funny look as if to say he knew something that they didn’t.
So it became clear to me that this kid loved tacos. When I think about Ayelet, she loved Straws and stickers more than anything.
And for some reason his picture was stuck to me, like Ayelet’s. His mischievous smirk. If only we could continue Noah’s dream for him in a positive way to show how much life this little kid had.
So in a late night brainstorm with my digital coworkers we can up with this site idea. Tacos for Noah - A site to make your own virtual taco for Noah www.tacosfornoah.com and add your special ingredient (guac, cheese, fish) or prayer (world peace, love) to remember this ‘little man’, as he was called by his mom. To virtually create his Taco Factory. His future.
If you get a moment, try it out. Everything I learned about tragedy is about ‘the response’. The reaction.
And while it will take time, we can bounce back to be better - and so this is my first start at helping remembering this ‘little man’ with the big soul, and mexicali palette, with pure positivity - just like another precious soul we we all hold close to our hearts.
So now my wizard of oz mantra is: “Tacos, Stickers and Straws. OH MY!”
Thanks Hindy and Thank you all for being here. When thinking about the connection between Ayelet and the Torah, I was skeptical when Lawrence Witt called us about the project – because Ayelet was a girl who honestly, didn’t have much exposure to Torah in general. She was like our get-out-of-Judaism-free card for two years.
But still she is Rabbi Poupko’s granddaughter, so she couldn’t be that irreligious? I thought I’d share one moment of how irreligious Ayelet was, that has been stuck in my head:
I vividly remember her first Yom Kippur, I was walking back for the break and I see our nanny, her son Josiah, pushing the stroller down Broadway. And what I thought was an oasis, looked like something was on top of the stroller. As I got closer I saw the stroller was covered in McDonalds Burgers, Shakes and Fries. I look in, and see Ayelet’s smiling happily playing with ketchup packets and holding a happy meal fry. I was wearing a kittel, she was wearing a happy meal. Again, It is Yom Kippur, one hour before neilah. So I wouldn’t call her the most religious of gals.
But all of Ayelet’s journey had some Jewish context - from the beginning when she got sick and Rabbi Poupko & Mindy came to New York and did the fastest Passover seder in the history of the world, instead of 4 cups it was like 4 shots, so we could get back to Sloan Kettering for Ayelet —- to celebrating the miracle of the 8th day of Chanukah last year in the ICU with the miracle of Ayelet awakening, being extubated after fighting off a lung infection – all of her journey was set with the back drop of the Jewish Holidays.
And every blog health update through the transplant was 1 part updated with medical updates, and 1 part an in-depth detail of the tin-foiled kosher foods, the warming tray, the smoked meat, the kosher coordination that Tamar and Arna so perfectly planned and provided for Shabbos or Succos or a regular Tuesday. All of her tragic story was a story of being Jewish through these challenges.
And sadly when we needed it most, this is where you came in, the tehillim prayer groups, the challahs, the asher yatzars and ultimately, heartbreakingly, the shiva visits from Montreal, Israel, and Cincinnati were all a testament to how superhumanly “Jewish” we all became for a little broken girl - who literally herself- had no Jewish identity.
We all immediately, without shame or judgment, knew what to do. What was important. She reminded us how to act, how to live and most powerfully, how to respond. The least religious of us became these super-Jews?
And on a personal level of all her tricks, I loved most when my yarmulke would fall off - Ayelet would quickly put it back on my head. She reminded me of who I was, my yiddishkeit. So I ask you: How is it that a girl who had no Jewish identity no understanding of Judaism, was able to provide us all with a sense of everything it stands for?
And in thinking about the connection between Torah & Ayelet, it hit me when I thought about Hospital Rounds in Cincinnati. Every morning we would leave Ayelet’s room and be greeted by 20 doctors in a circle from all disciplines, running through every drug every number. And in moments there would be a Talmudic conversation about what it means. Dr Davies says this, the attending says that, fellow/attending disagreed, this medicine or that medicine, machlokes Sloan Kettering/Cincinnati. Every drop, every number mattered, and changed the outlook. The family and doctors were arguing like Tosafos/Rush and Rambam and it was overwhelming, hard to understand and get my head wrapped around it all.
And then we would do the clinical view, and we would walk into Ayelet’s hospital room and there Ayelet would be happily playing with a sticker-sheet from Montreal, a straw from NY, and wearing a perfect outfit & headband. She would pivot look up and smile. Huh? Is this the same girl we were just talking about in numbers, doses and charts?
And it became clear that the numbers, the medicine, and frankly her disease were just incidental to Ayelet’s real story. Posting one picture of Ayelet’s smile, made us pivot to her real story. Just looking at her – we were all mesmerized with her ability to live and keep on living, fighting. The way she played with stickers like it was her life’s work, and unraveled straws like everyone was magical. She snuggled to Hindy so tight and slept so close when she was tired. She was so clear on what she loved and what she didn’t. Without words she knew what to focus on, what was important.
And while I mentioned Ayelet knew nothing about Torah, I’d also like to submit to you that she knew nothing about death either. She was all about life. With every inch of her 14lb body and soul her single message she gave us was to live. That’s all she knew.
This was her gift to us. Her reminder to us. To pivot to what is important.
And when I think about it, the Torah works in a similar fashion. Like Ayelet, this Torah is little, it cannot talk. It cannot walk. But how mesmerized were we watching it being written?
It is that same reminder. That beating heart that reminds us to choose life. To pivot to what is important. The commentaries, the halachos, the laws, the mitzvos, are so important to keep us focused on what matters, but we cannot lose sight of the north star, the main message of Judaism. The eitz chaim - it is the tree of life. To live life to the fullest. This is what the torah and mitzvos are there for.
You know, this week was Ayelet’s birthday - and I thought about when Ayelet was born, right around Chanukah this time, people would wish us the customary blessing – may Ayelet live to “Torah, Chuppah and Massim Tovim” Which is hard to think about… And since Ayelet is not here - I would submit that this Montreal community, this Montreal event, achieves this blessing for her. Humor me to go through it for a second.
The first one is easy. Did Ayelet live up to the Torah? To live a life rooted in these values: As we said, Ayelet didn’t know it but she embodied the values that we all aspire to. She made us better. And this Montreal Torah is for her.
It’s interesting that there’s a mitzvah to write a torah, but if you can’t, you can appointed someone to do it for you. The sofer (Thank You Jamie Shear for dedicating the last 6 months to writing this perfect torah). And it’s a mitzvah to get an aliyah and read the Torah and if we can’t someone does it for us. The baal koreh. This idea of shaliach, a messenger, to do it for someone who cannot. This Torah is our way of being a shaliach for Ayelet, to keep living, when she cannot. This was her message, her gift, and she fulfilled this blessing.
The Second is harder to think about - To chuppah? Wedding canopy. Did anyone notice how we danced the torah in? There was a chuppah just like a wedding. There was dancing, just like the wedding. There will be food just like a wedding.
Weddings celebrate the creation of a new community, like our Ayelet Nation, and continuation. Again, this community has pickuped, to be her shaliach, when she cannot, to continue on. How fitting this dedication is on Ayelet’s Uncle Ezy Poupko and Chany Wilner’s ufrfuf weekend, celebrating continuity, celebrating the chuppah and in turn remembering Ayelet.
And finally the Massim Tovim. Did Ayelet fulfill doing good deeds? The outcry of all that was done and continue to be done in memory of this little girl who with no energy was able to move mountains. 55 bone marrow matches found. A wave of good deeds to match the wave of tears. All for Ayelet. And on a personal level have we not become better people, better parents, better jews?
So I hope we can continue to be her shaliach of this message. And every time we see this Torah being read or held or lifted for Hagbah - think of Ayelet. Pivot to what is important. Ayelet wasn’t strong enough to move but she would always love to answer when we asked “How big is Ayelet?” “SO BIG!" Lifting her hands. Like she was lifing the Torah. Like Moshe Rabbenu, Like Rocky Balboa. And, in turn, lifting us. So thank you and let’s all continue to be Ayelet’s little messengers.
I just wanted to thank Rabbi Septimus and thank you Young Israel of North Woodmere, and everyone for being here for this awesome communal event - and donating to such an important cause, The Gift of Life. Jews are massively underrepresented in the international donor registry and every single penny, donation, goes to getting more of us in the system. Giving someone else another shot.
This works for tonight, since Jews are massively underrepresented in the NFL - so since we can’t really play – we can watch, support, and obviously eat to the level of an NFL football player. Thank you for all of this.
Special shout out to my mentor Jordan Hiller who took a roadtrip with me to Graceland when we were 19 and aside from my mom, is the biggest bangitout/galena promoter I have ever met. His enthusiasm is infectious. 100%. He is someone who is crazy enough to make you believe in the impossible –even when there is no power, no TV, no basement. He makes the impossible possible with events like this. It’s his Magic: This is the real trick of his J-Trick email address. The Hillers, a source of so much good, a treasure to have in your community.
But before we get back to the game, I wanted to take a few moments to talk about our daughter Ayelet who many of you know through her courage, her story, her fight - but what you didn’t know was…. she was an avid football fan.
Here is a picture of Ayelet at a Philadelphia Eagles playoff game reunion with all my highschool friends. This may be abit awkward considering this is a Giants party. However I do have Cruz and Nicks on my fantasy team, so I am allowed.
Ayelet was an absolutely adorable cheerleader.
Her vibrant big smile shown through, eyes wide open, cheering her dad’s team with her family. Like most insane dads, of course, I bought every sports paraphernalia you could ever imagine, boxes of philly sports onsies lined Ayelet’s room.
But this was before it all, when she was just a year old, she had some symptoms, but before we knew she was really sick. We got a call a few weeks after that game from a doctor at CHOP in Philly who said Ayelet was diagnosed with a horrifying disease called Dyskaratosis Congenita, a disease so rare it’s a 1 in 4 million chance getting it. It has many affects on her body, the worst being it causes bone marrow failure. She’d need a bone marrow transplant and needed it now.
Ayelet was sadly chosen, drafted, and we needed to react.
And so we used facebook and bangitout.com – a website I ran with Jordan and my brother - and teamed up with the Gift of Life and the Jewish community – and through friends like those here through Moshava, Ramah, YU, Reishit, Y&R, VML, the UWS we had tons of marrow drives in so many Jewish communities and beyond… Unfortunately we never found a perfect match but it was good enough to move forward to transplant in Cincinnati, OH. I said if bangitout.com was created for the sole purpose about getting this message out – I say dayenu. If every Jordan Hiller Movie Review equated to another person in the bone marrow registry – it was worth banging it out. And through this we had hope.
In the end, we found 52 lifesaving matches for others. As we have seen with Sandy, another testament to how a real community like this reacts in times of struggle.
And the funny thing is, when we got to Cincinnati to do the transplant and started the blog documenting her battle, we realized we were totally wrong about Ayelet being the cheerleader. The fan.
Hindy and I in fact were the cheerleaders.
Ayelet would have to play.
It was her on the field, not us. It was her fight, her game, and all we could do was cheer. And through the blog we created Ayelet Nation, this loyal fanbase, many of you here tonight, were cheering louder than we could ever imagine.
And after the past two years of fighting, I am absolutely convinced, based on what I have witnessed, and this kid’s will to fight, to live, that my daughter Ayelet could have had an absolutely amazing NFL football career. I’m serious.
Think about it, what makes a good football player? Aside from the fact that Ayelet had a perfect game face (below), I’d wonder what traits do the best players have?
First, I would argue is strength. While Ayelet could not walk and barely crawl, the strength she displayed through her ordeal was superhuman. The doctors said they were baffled that they found she had Pancreatitis, one of the most painful diseases, because she didn’t show the pain. Her resilience was astounding and at times I could only imagine how much pain she was playing through to keep her fight going. For us. For her. She was damn strong. Her body was beefed up covered in wires and medical equipment but how strong she was underneath it - how tough, Angry bird, LT tough, Reggie White tough.
The second trait for a football great is leadership. Ayelet could not talk but she would be very clear what she wanted. The Poupko Personality. Strategic. A Brut. She would lead us onto the field, on what to do, without words, she would set the tone, and she would call the shots. Like a QB speaking in code, and the team knowing exactly the play. Eh, pass the blankie, Eh, don’t leave. Hindy and I still communicate in her non-verbal language. Cornerbacks read the eyes of a QB. To read the eyes. To see her fire. To know exactly how they feel without words. We all know this and have people we do this with. Ayelet led and played and lived the way she wanted. And she would decide when it was time to fight, time to snuggle and when it was ultimately time to say goodbye.
Interestingly enough, many of us are in fantasy football leagues. And with this I will close, and you choose players not based on their team or their location but based on their individual performance.
And when I think about it, it is this point that I am so proud about Ayelet Nation. The tens of thousands who drafted our daughter Ayelet and her story as if she was their own child, their underdog, their shining star.
They put her on their team, and cheered her when she was up - and cried and prayed to the depths of their souls when she was down. You stuck with her through this journey and continue to remind us to keep carrying her message. To keep her sense of vitality, and the vitality she gave us, alive. Her fiery black eyes fighting for life. You followed our Ayelet, our swift deer, our little pug of a running back, and ran with her story.
And we need this. We need to carry her, carry this Ayelet experience with us throughout our lives. She was our daughter, but she was on each of your teams. Is there any other community who does this with the children of strangers?
And most of all, Ayelet was eternally in your hearts, and Ayelet, above everything else, was all heart – or as they say in the movie Jerry Maguire – “No heart? I’m all Heart MotherF##$%.” Sorry.
So thank you for this beautiful event and let’s keep cheering for those in our lives whomever they may be, who remind us to keep fighting and living. Hold them close. Ehh Ayelet would say - Get off the sidelines and get into the game. Ayelet would have liked that and just smirked to see you along with her. Thank you.
Hindy & Seth gave out two Ayelet Courage Awards to Ezra Fineman and Dylan Rabinovich….here is the portion of the transcript from last night’s magical night:
NY1 Reported on it today: http://www.ny1.com/content/top_stories/172551/hope-for-perfect-match-shines-at—gift-of-life—gala
Thank you Kelly, were so honored that you could be here tonight, I feel like saying, xoxo, but I wont.
Good evening everyone, were so moved to be here with all of you and thankful to be able to honor our daughter Ayelet in this way.
Everyone in this room represents what we have come to all, “Ayelet Nation,” friends, family, and people we never met who came together to support us and Ayelet these past few years. Tonight’s event serves as testimony to the incredible people who stepped up when we were fighting for Ayelet’s life and who continue to be there to ensure that Ayelet and her story will never be forgotten. While, there will always be a hole in our hearts, all of you in this room have helped, each in your own way, to bring us comfort.
Jessica, you are the force tonight’s event. You have modeled for all of us what it means to commit to cause and see it through. Look what you’ve done and how many lives you have already saved. Words will never adequately express our gratitude to us for bringing Ayelet to life tonight.
Who was this pint sized 14lb ball of fun named Ayelet – a name most can barely pronounce? It’s my job to introduce you to her, to those who didn’t follow her, or for those who did. To bring her to life tonight at this very special event.
So meet Ayelet.
First - Ayelet’s personality was revealed most when we got to the hospital for the transplant. Ayelet couldn’t talk, barely crawl, but she was absolutely clear about what she wanted. So many odds going against her, still her hard nosed Poupko personality shown almost too visibilly though. Pass me my blankie. Snuggle with me so tight. We’d walk out - Don’t leave. Hindy and I still sometimes don’t talk and communicate better like ayelet. I’d put on a whole show making jokes or sing songs at 2AM and she would just look up smirk and go back to her work. A brut. An angry bird. A fighter. She was growing up in the hospital before our eyes. Her, albeit high maintenance, personality came to life.
She also somehow got extremely creative. Medical bottles became fun, removing caps and stickers off them. She’d spend half a day peeling stickers and posting them to the hospital wall, and the next half of the day removing them. She’d take every hospital straw and unpeel them. So entertaining. Even today I still steal straws from 7/11 for her. Her absolute creative ability to entertain came to life.
And for me, when my yarmulke fell off she would quickly pickup up and put it on my head. She reminded me of who I was, my purpose, my responsibility on this planet. Are we fighting like she is, who with nothing was able to give us a sense of everything?
Admit it, it was thrilling. I look back and while this may sound strange, those months in the hospital were my happiest of my entire life. I had a higher sense of vitality than any time before. And for you, was there anything more thrilling that reading the ups and downs of Ayelet on the blog? Every morning update mattered. Living for months in the bottom of the ninth. The goalline in the superbowl. And Ayelet would just smirk and go back to her stickers, be herself.
Why? Why did readers gravitate to this little shaved head wonderfully dressed ball of life? Ayelet reminds us that real life is a gift, a gift, with ups and downs and tears and laughs and complexities. But it’s our job to live it. And we need to be a brut, be Rocky, be an angry bird be giving because this is all that matters.
You know I sometimes cry about Ayelet. And with this I’ll close, but it’s never ever out of sadness, or feeling bad about myself. It’s tears of pride.
To be so so proud of our brave daughter. Proud how damn tough she was, proud how she made us live, reawakening a sense of purpose in us, of courage, strength and bravery that I did not know any of us had.
Proud of our friends & coworkers who got up and fought like Ayelet was their own child. Now, this is real community! Tears of pride poured when her story was listed as the 50 most impactful of the year. Over 50 matches – has a parent ever been so proud?
And crying out of pride and joy for events like this, that were created out of nothing. If this broken little 2 yr old could fight for life, give her everything, that why cant we live like this? We have this experience and we need to carry it, carry her, with us for the rest of our lives. And when we get down or feel helpless - because it is hard, think about this little soul that was able to move mountains, can you hear her? As her name goes - I don’t say it – I YELL IT. All of our souls are screaming for it, we need it, and I know all of us can do it. Thank you.
Now, Ayelet didn’t have many friends as we had to keep her away from those germy two year olds…but one friend she did have was our first award winner.
While Ezra and Ayelet never met, we often imagined them being best of friends and even joked about them getting married one day. Ezra sent germ-free drawings to Ayelet in the hospital and Seth and I had the privilege of getting to know Ezra’s parents, Robin and Evan, as they embarked on the difficult path of finding a match for Ezra.
Ezra needed a match to cure his rare primary immune system disorder called Hyper IgM Syndrome, which prevents his body from producing antibodies to fight infection. With a faulty immune system, Ezra has been unable to enjoy normal childhood activities like preschool, birthday parties, and playdates.
As no suitable bone marrow donor was found in Ezra’s family or in the worldwide registries, Robin and Evan contacted Gift of Life to help them find a match for Ezra. Bone marrow drives were held throughout the country and the world with the hopes of finding him a perfect match and after 2 years of searching, these drives led to over 4,500 potential donors and matches for nearly 60 other patients in need.
As no bone marrow match for Ezra was found, his parents made the difficult decision to move forward with a riskier transplant using a mismatched cord blood unit and the transplant took place this past May. Ezra continues his recovery at home and in isolation. It is currently unclear whether Ezra’s transplant is taking and whether he will be cured. Despite these difficult circumstances, he continues to amaze the watchful doctors and nurses with his spirit, enthusiasm for life and his love of basketball, music and space shuttles.
Seth and I went to visit Ezra at Sloan Kettering during the transplant and we brought him this really cheap golf set and we were just amazed at how much energy he had considering how weak his little body was.
We are all hopeful that Ezra’s donor cells will do what they need to do and that Ezra can live of life free of needles and doctors.
Nothing brings us greater joy than to present little Ezra, through his parents Robin and Ezra, with the Ayelet Galena Courage award, “In recognition of your incomparable courage, incredible resiliency and loving and infectious spirit!”
Robin and Evan, please come to the podium and accept this award on behalf of Ezra.
Shortly after Dylan Rabinovich was born, he was moved to the NICU because he was jaundice and suffering from what doctors call, “failure to thrive.” In time, his parents learned Dylan has a very rare and severe genetic disorder called Emanuel Syndrome. Instead of having 46 chromosomes, he has 47.
Dylan’s life has been a whirlwind of doctors, many hospital stays and hundreds of tests. Emanuel Syndrome is so rare that only about five children are born with it each year around the world. In addition to Emanuel Syndrome, Dylan has a host of other medical problems and his parents were told Dylan would not live to see his first birthday, but he has defied the odds. This December, Dylan will turn 7.
It just so happened that Dylan and Ayelet were one floor away from each other when Dylan underwent lifesaving surgery at Cincinnati Children’s Hospital.
Dylan is a living inspiration to us all. He teaches us to never take no for answer and to not live your life by anyone else’s expectations but your own.
Dylan’s courage to face the many complications and difficulties of his life is truly humbling.
We are so honored to be able to recognize Dylan’s courage tonight and present him and his parents, Melissa and Oleg, with the Ayelet Galena Courage Award, “In recognition of your bravery, fight for life, resilience and for being a very charming young flirt!